Hello Christine,  how are you? Have you had your appointment with your oncologist and spoken about the Oncotype test?

We were updated 2 weeks ago that only 2 lymph nodes on my mother's left side were affected, but that one lymph node was large. My mother and I met with her oncologist again today and found out that her Oncotype Score is 7 (Low). This means that the risk of recurrence is not considered high enough for the oncologist to advise her to have chemotherapy. This has come as a massive relief to my mother - to us both! I'm very amazed at how quickly the test result arrived as the tissue had to be sent to America and analysed. It has really helped my mother to make her decision about having chemotherapy or not. It's also saved the NHS a considerable amount of money. My mother is starting Femara treatment today and will be having radiotherapy in January. She is uncertain at present about whether she wants to have radiotherapy on her supraclavicular fossa as the doctor has said it is borderline as to whether she needs this and there is a 5% additional increase to getting lyphodema.

Have you had any updates about the type of treatment you will be receiving? I hope everything is going well. Let me know how you're getting on.

Hi Marjan,

Your message is very timely because I had the meeting with ththe oncologist yesterday. Unfortunately I don't think it helped me.  First of all she wouldn't look at my questions, which I had written down, she knew what she wanted to say and steered the meeting accordingly. She repeated things I already knew but it felt like she thought I had made up my mind not to go ahead with further treatment, not that I needed guidance.  Also some of the things she said were not actually true. She said that a bone density test would be done before treatment started to get a baseline reading, but anyone I have spoken to have already started the potentially bone damaging hormone treatment way before having the Dexa scan. My son and I came out of the meeting no nearer making a decision.  We came out thinking there was no right or wrong decision to make. 

I could have all the treatment, with or without all the side effects, and I could live beyond the ten years she was quoting, or I could do nothing more than I already have and still live that length of time, OR I could have all the treatment or no treatment and still be one of the 32% who didn't make it. No one knows in advance how an individual will fare. It is such a lottery  

Bless him, my son said to me afterwards, "You know I want you to live for as long as possible, but I want you to be happy" 

i was given two leaflets about the Proposed treatments- hormone and bone - and it doesn't make easy reading. My daughter is going to read them today, she and my son will be discussing the meeting in case he heard something I didn't and then we are kicking the subject out of touch until after the New Year. I will have Christmas here with my daughter then my birthday and New Year at my son's and the subject will be banned!!!

I would, however, really appreciate it if you could keep me in the loop about how your mum copes wth the Femara. My friend who I met in hospital when we both had a mastectomy has been taking it since her follow up, two weeks later.  She has found she doesn't feel as bad from it if she takes it after her evening meal.

You are really helping me by keeping in touch, thank you. 

Chriistine x

Hi Christine. I'm sorry the visit with your oncologist left you with more questions and uncertainty. I think it's actually really important that an oncologist does listen and respond to most questions asked of them. This in itself can help us to feel comforted that they have our best interests at heart irrespective of whether they have all the answers. Can I ask, was the cancer ductal or lobular, or maybe both? From what I understand lobular cancer in older women may not necessarily benefit from chemo; ductal cancer sees more benefit. Did she spell out the additional benefit to you in terms of how many live people live a further 10 years on chemo above and beyond those with surgery alone, versus those who have had surgery and take anti-hormone tablets?

The oncotype test really helped to make my mother's mind up because her risk of recurrence score was low and her ER+ and PR+ scores were high indicating that anti-hormone tablets would be the best course of treatment. Is there a way of finding out how oestrogenic your cancer was? This might provide some reassurance that it's very much worth trying the tablets and seeing how that goes. Technically, your oncologist is right about getting a "true" baseline score of your bone density before starting medication, but in real-life settings I think if the time-frame between starting the tablets and getting the bone scan is only a couple of weeks it is unlikely to impact the score very much. If you feel that you are not being listened to by your oncologist, I think it's worth explaining what you would find helpful from the consultation and asking from the outset if the oncologist is willing to answer all your questions. If she is not, then you can request a second opinion via her or your breast cancer nurse.

I think it's a good idea to have a break over Christmas and New Years and actually you might find that you have more clarity when you return to thinking about it later on.

Keep me updated on how things go. It's helpful for me too to hear from you.

Best wishes for the holidays.

Hi Marjan,

In answer to your questions, my cancer is lobular, fully eostrogen receptive but I have no idea how fast growing it was or how likely it is to recur. These were the questions I haven't had answered and which would have a bearing on my decisions. I wrote them down and gave her the sheet of paper and she wouldn't even look at them . However, my son came away thinking she said she would put all my results in a letter, but if they are in the same format as those I have had previously I will be none the wiser as it is the abbreviations and numbers that don't mean anything.

She did the NHS Predict stuff based on 10 years, whereas I had checked all three predictions of 5, 10 and 15 years,and the percentages didn't impress me when she could only say there were no guarantees that I would be in that cohort that did benefit, as there is a percentage of people that have all the treatment and still don't make it.

Anyway, for now I am being spoiled rotten by my lovely son and his equally lovely lady, the sun is shining and my dog is behaving himself, so all is good.

It's my birthday tomorrow and decisions can wait for a few more days.

Happy New Year!

Christine xx

Hi Christine,

You sound like you have had a wonderful time with your family and taken a good break from thinking a lot about next steps. I'm glad you have enjoyed being spoiled.

From what I understand, I think they do test for the degree of oestrogen and progesterone sensitivity and the results should be available for you to see via your oncologist. Also, from what I have read, lobular cancer in older women often tends to be grade 2, highly oestrogen sensitive with a slower growth, and spread to lymph nodes. Anti-hormone treatment is often used in combination with radiotherapy, rather than chemo.

It is very interesting that my mother was able to get the Oncotype Dx test because the Predict Tool would have indicated that chemo would have been helpful.... whereas the genetic test indicated a quite a low risk of recurrence if anti-hormone tablets are taken.

I hope you come to a decision that is right for you regarding treatment.

Hi Marjan and everyone else who has been kind enough to join in with this thread?

I have made my decision, and later this morning I will pick up my first prescription for Letrozole. I have decided against the bisphosphonates as the predicted benefit of those is only an additional 1%. Instead I have ordered a vibration plate exerciser because when I checked the science behind them the only proven benefit is an increase in bone density!

I will give it a good go, and if the side effects are easily bearable I will continue to take it as long as necessary- but as I've said before, I'm a wimp and if they make me feel ill.............

Thanks again for helping me to come to my decision.

Christine xxx

Hi Christine,

So sorry for the delayed response, I've been accompanying my mother to radiotherapy this month and I seem to have lost track of things. I'm so glad you feel you've made the right decisions for you. Have you started taking Letrozole? Interesting to hear about the vibration plate. Is it fun to use?

Let me know how you are getting on.

Hi Marjan,

I hope your mother is finding the radiotherapy tolerable. And I hope you are not feeling the strain, too much. I know it's harder for my children than it is for me, q

i have started taking the Letrozole, I've got the generic one, not the branded Femara. I've only been taking it for a couple of weeks so nothing much to report so far, except the odd hot flush. My friend who took it from October has stopped taking it because she felt so ill on It.  She may try another kind of hormone blocker after the Letrozole has left her system, although she is not sure.  She was a healthy active 82 year old until now and has had to start using a stick because she is having such joint problems and has lost weight because she feels so sick she can't eat.  

The vibration machine has shown itself to have an added benefit, not only will it help with bone density, it will help my arthritic knees. My physiotherapist has shown me exactly how to use it for that purpose and I do believe it is doing some good!  It isn't fun, though!! I have to have something to hold on to, close at hand, in case I lose my balance, and the three minutes daily I have been told to do feels a lot longer!  If it helps though, it will be my best friend.

Christine xx

Hi Christine, 

Sorry again for the slow reply, my mind has been in many different places at once... How are things going with the Letrozole? And is the vibration machine continuing to be helpful and is it now your best friend? I'm wondering where you purchased this machine... my mother does have arthritis in her knees so it would be lovely to find something that could help.

Mum has finished radiotherapy and during the course of 15 treatment sessions she didn't actually have any symptoms, but 1 week later she has a rash and some skin peeling. She has been applying the double base cream prescribed for her and she has been also using 'Emergency burn gel' from Boots which she feels has been helpful.

Mum has experienced more aches and pains since starting her Letrozole treatment. She does find sitting down for long periods of time results in her having stiffer joints and experiencing more pain when standing up. Some days are more pain free than others. Her GP has recommended using paracetamol (1000mg x 4/day maximum) as and when mum requires it. Mum tends not to like to use additional medication, but sometimes has Lemsip which she finds helpful (Lemsip contains paracetamol and phenylephrine hydrochloride for unblocking noses....not required but it seems not to be fine to take every so often). She has her next appointment with the consultant this coming week and we'll speak further about side effects and potential alternatives to Letrozole.

Hi Marjan,

No need to apologise, I know what it's like trying to keep on top of things.  I have always thought it must be worse for the family than for the patient as you have to try to get on with your other life as well as the nightmare that is watching loved ones struggling with cancer treatment?

I am happy to say that I don't seem to be getting on too badly with the Letrozole.  I am definitely not my usual self, but it isn't as bad as I thought it would be.  To be honest I've been feeling so sorry for myself with my knee, I haven't given the Letrozole side effects a lot of thought.  I can relate to your mum's aches and pains and her reluctance to use medicines.  I was In so much pain with my knee that I went to the doctor and was given codeine!!  Sledge hammer and nut come to mind, but I did take them at bedtime to enable me to sleep. Two days later my physiotherapist refused to treat the knee as it was swollen and hot.  He telephoned my doctor and got me an urgent, same day, appointment and I was referred for an X-ray and given an appointment to have a cortisone injection.  I had the injections, one in each knee, last Thursday and my knees have been so much better I even went for a long walk yesterday. I was told not to use the vibration plate until the physiotherapist sees me again, just in case the X-ray shows something untoward, although my doctor just thinks it's an arthritic flare up. I was enjoying it, though and will start again as soon as I can.

I got my vibration plate from Ideal World TV they still have them and I think the price has dropped. The same week I bought mine, they were available in Aldi and Lidl for a lot less but they didn't include everything I got with mine.

A lady I met in hospital when I had my mastectomy gave up using the Letrozole because they made her feel so ill. My appetite has been affected, which is no bad thing for the moment, I have been getting slight headaches, which I never used to get, occasionally I feel a bit nauseous but only for a short time and I do come over all hot and bothered at least once a day but none of these things makes me feel too bad so I'll keep going for now. I may find I'm aware of more things now my knee is not taking up all my thoughts, but I'll wait to see if that happens.

There are at least two other drugs that work in the same way as Letrozole which may be easier for your mum, my breast cancer nurse told me I could change to one of them if I was unhappy with the Letrozole but so far so good.  I hope your mum finds the visit to the consultant satisfactory and gets sorted.

I was really lucky in that I didn't need radiotherapy or chemotherapy so I didn't have any of the associated problems they can bring.  I have, unfortunately, got lymphoedema in the scar tissue from my mastectomy which is uncomfortable and I have to do exercises to drain the lymph away from the area as the swelling can't just be drained away like a seroma. Annoying but manageable. I still feel I got away with something compared to some other people.

Christine xx